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Saturday, August 17, 2019

I’ve said in more than one blog that I consider myself to be a healthy person who happens to live with multiple sclerosis (MS). “Healthy,” perhaps, but lately I’ve found myself significantly out of shape.

With all that 2016 has brought upon me, I decided to ask my wife, Caryn, for help in getting onto a stretching program to help with the things that MS has thrown my way.

How to Stretch With MS
The National Multiple Sclerosis Society (NMSS) has set out the following guidelines for people with MS as we get into a stretching routine:

Stretch on a daily basis, as much as is possible.

Include muscle groups that are tight or in spasm.

Do slow, gentle, prolonged stretches, and go just to the point where you feel a gentle pulling, but not pain.

Hold stretches for 20 to 60 seconds or 5 to 10 breaths.

Avoid bouncing movements.

Use assistance as needed: a partner, towel, or strap (talk to a yoga teacher or physical therapist about what you can use to help you stretch — and how to use it).

Most of the stretching I’ve been doing has included some form of assistance — be it a chair, the wall, or often, Caryn herself. My balance has become something of an issue, so having something or someone to hold onto while stretching has been helpful.

Also helpful for when balance is even more of an issue is an illustrated, online manual from the NMSS called Stretching for People With MS.

This manual has drawings of stretches that can be done seated or lying down. It has specific stretches for some areas of spasticity and other difficulties that commonly affect people with MS.

For my own routine, I’ve dug out my physical therapist’s notes from after my hip replacement to help ease some stiffness in that area of the old body, particularly.

MS is a constant balancing act of extending yourself and protecting yourself.

iStock

Many people with multiple sclerosis (MS) either goad themselves or are chided from the sidelines that they are not doing enough. But how much is enough?

Back in April, I damaged my rotator cuff — a grouping of tendons and muscles that surround the head of the shoulder joint — which had nothing to do with my MS. It was an acute injury, and I wasn’t sure at the time how bad it was … you know, other than the pain.

It was a pain that dropped me to the floor (and ground) on a number of occasions and woke me up, panting in agony.

Over time, as I waited for it to heal enough to see whether I might be able to simply rehabilitate the joint or if it might need more invasive repair, I learned the limits of movement that wouldn’t bring the white-hot knife slicing through my joint. Even in my sleep, it seems, I was aware of my limitations, as I now wake in anticipation just before I cross into the excruciating zone.

Understanding and stopping MS in its tracks requires a better understanding of the role that the immune system plays in this disease. This system is involved both in the inflammatory attacks on myelin and, very possibly, in the injury to axons (the wire-like nerve fibers) that contributes to longer-term disability. Research on the immune system includes studies on:

Understanding components of the immune system such as T cells, B cells, and antibodies

Identifying new targets for therapeutic intervention while leaving the rest of the immune system capable of fighting infections

Identifying substances and processes involved in the injury of axons

Identifying the body’s natural immune messenger molecules that can either turn on or turn off immune attacks

Much has been learned about immune system activity in the relapsing-remitting phase of MS and this knowledge has led to the development of effective disease-modifying therapies. Less understood is the relationship between initial immune activity and progressive neurodegeneration and how innate immunity participates in the progressive phase of MS.

We’re making progress

Studies of the immune system in MS laid the groundwork for every disease-modifying therapy now available, and these studies continue to hold promise for finding ways to stop MS. Here are reports of recent progress:

Researchers co-funded by the National MS Society report study results indicating that “Tregs” – regulatory immune cells that are known to be dysfunctional in people with MS – play a role in promoting formation of new myelin following damage. If the results are confirmed through further research, these basic laboratory studies could eventually be translated to promising new therapeutic approaches to stimulating myelin repair to restore function in people with MS. Read more

Treatment with ATX-MS-1467 (Apitope) – an injected immune therapy whose early development was supported by the National MS Society through Fast Forward, the Society’s commercial research funding program – was reported to reduce disease activity on MRI scans in two small open-label studies involving people with relapsing MS. This is an approach to identify pieces of human proteins, called “peptides,” that might be able to reinstate “immune tolerance” – in effect, train immune cells to ignore myelin – to suppress MS attacks. Read more

Scientists at the University of Florida, funded in part by the National MS Society, took a novel approach to turn off immune attacks in mice with an MS-like disease. The team used a harmless virus to deliver a gene coding for a specific component of myelin, a key target of immune attacks in MS. Further research is needed to verify and refine this approach before it can be tested in people.

Understanding the processes that lead to tissue damage in MS is crucial to our focus on reversing this damage to regain function through nervous system and myelin repair.

Overview

We pursue all promising paths to uncover solutions for EVERYONE with MS, wherever those opportunities exist, while focusing on three priority areas, including progressive MS – bringing answers and solutions where none exist today; and nervous system repair – reversing damage to regain function through nervous system and myelin repair.

Understanding the processes that lead to tissue damage in MS is crucial to these priorities. The immune attack in MS unleashes a cascade of events that damage the wire-like arms of nerve cells (axons) and the insulating tissue (myelin) that wraps around axons, disrupting nerve signal transmission.

Driving solutions

Research focusing on understanding the extent and causes of damage to the nervous system in MS is driving progress that will help us find ways to protect the brain and stop disease progression. Current research approaches funded by the Society's research programs include:

Investigating whether debris from damage caused by the immune attack causes further damage to nerve cells during the course of MS.

Exploring how alterations in the myelin coating after immune attacks affect the health and behavior of nerve fibers.

Identifying processes that contribute to the loss of myelin and ways to restore myelin to protect nerves and their function.

Seeking ways to diagnose MS earlier to enable earliest treatment as the best insurance against future damage.

Developing high-powered imaging as a window to seeing how MS causes damage and as a tool for tracking the success of treatments.

Past SuccessThe MS Lesion Project was a major collaboration of investigators worldwide who sought to understand the damage MS does to the nervous system and ultimately improve its treatment. This large-scale project was funded through the Society’s Promise: 2010 Initiative.

investigators sought to understand patterns of MS damage in lesions—spots of brain tissue where myelin has been stripped from nerve fibers. Claudia F. Lucchinetti, MD, with collaborators in the U.S., Germany and Austria, launched the most extensive attempt ever to map and understand the meaning of MS damage in the brain. They amassed an unprecedented collection of tissue samples from more than 1,000 people with MS, obtained from brain biopsies (a rare procedure) or autopsies. By identifying four distinct kinds of lesion patterns, the collaborators:

changed the way researchers think about MS

discovered that unique antibody patterns are associated with different lesion patterns, which could lead to a blood test to help inform treatment decisions

made significant gains in understanding when lesions form and how tissue is damaged, opening up new possibilities for strategies to stop that damage

An additional grant from the National Institutes of Health is making it possible for these investigators to continue making discoveries about tissue damage in MS that may ultimately drive treatment decisions.

Collaborators in Cambridge and San Francisco used advanced technology to evaluate genetic instructions within single brain cells in specific areas of brain tissues from people who had MS in their lifetimes, before there were disease-modifying therapies.

They report that a specific type of nerve cell called “projection neurons” – which normally facilitate communication between different areas of the brain – are especially vulnerable to damage in the cortex (the outer region of the brain, associated with disease progression and cognitive impairment).

They also confirmed the role of immune B cells in this type of damage.

This study yields important new information about how MS may progress and why certain symptoms worsen. If confirmed, it is likely to contribute to efforts to develop better, more targeted ways to stop the disease, protect the nervous system from further injury, and slow down MS progression.

This study was funded by the National MS Society and the National Institutes of Health, among others.

DETAILSBackground: MS occurs when the immune system attacks the brain and spinal cord. Disease progression is associated with damage in the cortex, the outer region of the brain, which is responsible for directing cognitive functions.

The Study: Investigators at the University of Cambridge and the University of California, San Francisco looked at tissue obtained from 12 people with MS via autopsy (who had never received modern disease-modifying therapies) and from 9 controls without the disease. They used single-nucleus RNA sequencing, a novel technology which allowed them to isolate many types of cells in the cortex, evaluate the genetic instructions and compare different populations of cells.

The researchers pinpointed a striking reduction of one cell type in the brain tissue obtained from people with MS – so called “projection neurons.” These are nerve cells involved in communicating information between distant areas of the brain. Further results showed that immune B cells were increased in areas with more damage to those projection neurons, highlighting the role of this immune cell type.

This work, by Drs. David Rowitch, Lucas Schirmer and others, was funded by the National MS Society and the National Institutes of Health, among others. Dr. Schirmer was a postdoctoral fellow of the Society, funded by the Dave Tomlinson Research Fund. The team published their findings in Nature (Published: 17 July 2019)

Conclusions: This study yields important new information about how MS may progress and why certain symptoms worsen. If confirmed, it is likely to contribute to efforts to develop better, more targeted ways to stop the disease, protect the nervous system from further injury, and slow down MS progression.

Friday, August 16, 2019

Findings

A gene on the X-chromosome may help explain why more women than men develop autoimmune diseases, including multiple sclerosis (MS). Researchers found that a gene known as Kdm6a was expressed more in the immune cells of women compared to men, and female mice compared to male mice. Additionally, when the Kdm6a gene was eliminated in mice specially bred to mimic a disease like MS, they had improved symptoms, reduced inflammation, and less damage to their spinal cords.

Background

Women are known to have about a threefold higher risk of developing MS than men, and also to have stronger immune responses in general. Previous research has suggested that this gender difference may be due to sex hormone and/or chromosome differences between men and women. Since women have two X chromosomes, they get a “double dose” of genes on the X chromosome; despite a natural mechanism to silence the extra genes, some genes elude this inactivation. The current study set out to determine which X-chromosome genes may “slip by” and show increased expression in females’ immune systems, and whether they may underlie the increased female susceptibility to autoimmune disease.

Method

The team first used RNA sequencing to determine which X-chromosome genes were expressed more in the T cells of female vs male immune systems. After finding that a gene known as Kdm6a showed the greatest sex difference, the team bred mice that lacked it—mice that were from a strain destined to develop an MS-like autoimmune disease. The specially bred mice without the Kdm6a gene had reduced clinical symptoms of the disease compared to their counterparts who had intact Kdm6a.

The researchers next inspected the animals’ spinal cords to assess damage that’s characteristic of MS. In mice lacking the Kdm6a gene, there was evidence of reduced autoimmune activity in spinal cord cells, reduced damage to the cells’ axons (the long extensions through which neural communication occurs, and which undergo deterioration in MS), and greater numbers of intact axons. The results suggest that deleting the Kdm6a gene has protective effects.

Finally, the team was also able to identify the molecular changes that are triggered by the deletion of the gene. In mice lacking Kdm6a, they found evidence of increased activity of multiple genes involved in healthy immune activity, and reduced activity of genes involved in neuroinflammation.

Impact

The results help explain why females are more prone to developing autoimmune disease and suggest that modulating the activity Kdm6a in T cells might be a potential therapeutic target for MS and other autoimmune diseases. The findings suggest that drugs like metformin, a diabetes treatment that has been shown to alter Kdm6a activity, might also deserve further study.

Our experts explain why and describe some exceptions.

Sheila Halloran Skowyra was coming up on one of her busiest weeks at work when she woke up with numbness in her legs and feet. "It was more like pins and needles. I could walk around fine, so I figured it was just a pinched nerve," says Skowyra, 37, an assignment editor at a Boston TV station and mother of two young children.

Illustration by Jorge Colombo

The symptoms persisted, but Skowyra powered through, overseeing coverage of the Boston Marathon and celebrating Easter and her younger daughter's fourth birthday. When she went to the doctor's office midweek, an exam and bloodwork found nothing alarming.

But by the following Monday, Skowyra could barely walk and felt like she had a band wrapped around her waist. She dropped her children off at school and headed straight to the hospital.

A subsequent MRI showed she had multiple lesions on her spinal cord, as well as older-looking lesions on her brain—telltale signs of multiple sclerosis (MS). Although Skowyra had worked on some stories about MS, she knew few specifics of the disease. She was soon to learn that MS is a chronic condition in which the immune system produces inflammation in the central nervous system, resulting in damaged nerves, potentially significant disability, and increased risk of mortality.

Disease severity and symptoms vary from person to person, but MS commonly causes problems with vision, walking, and balance, as well as unusual fatigue, pain, muscle weakness or spasms, numbness and tingling, bladder or bowel dysfunction, and cognitive and emotional changes such as depression and anxiety.

Skowyra was told she had relapsing-remitting MS (the most common form of the disease), in which attacks, or flare-ups, can occur at any time, followed by periods of partial or complete remission. "I was worried about the effect it would have on my children if I became immobile or disabled," Skowyra says. That concern informed her decisions when it came time to pick a medication.

Her neurologist recommended two disease-modifying therapies (DMTs): a daily pill that has been around for about nine years and a newer drug that is administered twice a year through intravenous infusions. Skowyra chose the latter because it had proved highly effective in clinical trials at preventing attacks and seemed like it would suit her busy schedule. She had her first infusion in June. "I wanted to get ahead of this [disease] and treat it aggressively," Skowyra says. "I wasn't willing to wait and see if I had another attack."

Abstract

BACKGROUND:

This review is an update of a previously published review, "Vitamin D for the management of multiple sclerosis" (published in the Cochrane Library; 2010, Issue 12). Multiple sclerosis (MS) is characterised by inflammation, demyelination, axonal or neuronal loss, and astrocytic gliosis in the central nervous system (CNS), which can result in varying levels of disability. Some studies have provided evidence showing an association of MS with low levels of vitamin D and benefit derived from its supplementation.

OBJECTIVES:

To evaluate the benefit and safety of vitamin D supplementation for reducing disease activity in people with MS.

SEARCH METHODS:

We searched the Cochrane Multiple Sclerosis and Rare Diseases of the CNS Specialized Register up to 2 October 2017 through contact with the Information Specialist with search terms relevant to this review. We included references identified from comprehensive electronic database searches and from handsearches of relevant journals and abstract books from conferences.

SELECTION CRITERIA:

We included randomised controlled trials (RCTs) and quasi-RCTs that compared vitamin D versus placebo, routine care, or low doses of vitamin D in patients with MS. Vitamin D was administered as monotherapy or in combination with calcium. Concomitant interventions were allowed if they were used equally in all trial intervention groups.

AUTHORS' CONCLUSIONS:

To date, very low-quality evidence suggests no benefit of vitamin D for patient-important outcomes among people with MS. Vitamin D appears to have no effect on recurrence of relapse, worsening of disability measured by the Expanded Disability Status Scale (EDSS), and MRI lesions. Effects on health-related quality of life and fatigue are unclear. Vitamin D₃ at the doses and treatment durations used in the included trials appears to be safe, although available data are limited. Seven ongoing studies will likely provide further evidence that can be included in a future update of this review.

Thursday, August 15, 2019

The majority of people with MS have other diseases to manage.
These other illnesses, called comorbidities, have been shown to impact MS
diagnosis, treatment and disease course. In case you missed it, our July newsletter
focuses on the potential impact of comorbidities on people with MS. Our
first article sheds light on which other health
conditions are most common in people with MS and how they may affect
those living with the disease.

It’s important for people with MS to assemble a healthcare team with the
appropriate specialists to manage the many facets of MS and any comorbidities
they may have. Learn more about managing MS and
other maladies and some simple strategies to help people with MS
achieve the best outcomes and quality of life possible.

In a recent Instagram post, actress Selma Blair showed off her newly shaven head and announced she “did HSCT” in an effort to slow down the progression of her multiple sclerosis.

This left many in the MS community wondering about the specifics of this new and relatively unknown treatment for MS.

Hematopoietic stem cell transplantation (HSCT) is a complicated and still experimental therapy that uses mild to stronger forms of chemotherapy to reset a patient’s immune system, erasing the memory of MS.

MS is largely recognized as an autoimmune condition, where the body’s natural defenses become confused and attack healthy tissues in the central nervous system.

HSCT carries many of the side effects associated with traditional chemotherapy, including hair loss, which likely explains Blair’s social media posts.

Doctors may have to repeat diagnostic tests for MS several times
before they can confirm the diagnosis. This is because MS symptoms can change.
They may diagnose someone with MS if testing points to the following criteria:

Signs and symptoms indicate there’s damage to the
myelin in the CNS.

The doctor has identified at least two or more lesions
in two or more parts of the CNS via an MRI.

There’s evidence based on a physical exam that the CNS
has been affected.

A person has had two or more episodes of affected
neurological function for at least one day, and they occurred a month
apart. Or, a person’s symptoms have progressed over the course of one
year.

The doctor can’t find any other explanation for the
person’s symptoms.

Diagnostic criteria have changed over the years and will likely
continue to change as new technology and research comes along.

The most recent accepted criteria were published in 2017 as the
revised McDonald Criteria.Trusted Source The International Panel
on the Diagnosis of Multiple Sclerosis released these criteria.

One of the more recent innovations in diagnosing MS is a tool
called optical coherence tomography (OCT). This tool allows a doctor to obtain
images of a person’s optical nerve. The test is painless and is much like
taking a picture of your eye.

Doctors know that people with MS tend to have optic nerves that
look different from people who don’t have the disease. OCT also allows a doctor
to track a person’s eye health by looking at the optic nerve.

Chronic lesions with a paramagnetic rim were associated with more aggressive disease and ongoing tissue damage and occurred even in MS patients treated with effective disease-modifying therapies, reported Daniel Reich, MD, PhD, of the NIH National Institute of Neurological Disorders and Stroke (NINDS) in Bethesda, Maryland, and colleagues.

Until recently, these lesions could be detected only at autopsy, they stated in JAMA Neurology.

"In MS, the standard of care is to follow patients with MRI scans and to treat active inflammation," Reich said. "In this new work, we show that MRI can also detect and evaluate chronic smoldering inflammation which involves microglial cells -- the so-called 'police force' of the brain."

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Monday, August 12, 2019

Americans spent $3.65 trillion on healthcare in 2018, according to an Axios analysis of federal government data. That breaks down to an average of $11,121 per person — which is nearly $400 more than the average spent per person in 2017.

While healthcare spending has increased for many Americans, some have figured out savvy ways to keep down the cost of medical care. Learn from these real people who have employed creative strategies to reduce their medical bills.

Opt For a Direct Primary Care Service

Paul Moyer, founder of the blog SavingFreak.com, discovered a way to slash his medical costs when he heard a radio interview about less expensive healthcare. The doctor being interviewed was talking about direct primary care — a membership service that some physicians offer instead of accepting insurance.

Moyer decided to ditch his traditional health insurance and sign up for a direct primary care plan, which requires a monthly fee but provides his family with unlimited access to a primary care physician. “If I have a problem, I can call them, and if they are not available, they call me back in less than 30 minutes,” he said. “Also, many times they can diagnose me over the phone and call in the prescription.”

Potential Savings: Hundreds of Dollars a Month

Moyer’s family of five had to pay close to $1,600 per month for a policy with a $12,000 deductible through the Affordable Care Act health insurance marketplace. Now, he pays $658 per month for the direct primary care plan and a healthcare sharing account from Medi-Share, and has a deductible of $5,500. So, by switching from an insurance policy to a direct primary care service, Moyer saved $942 per month on health insurance premiums and needs to spend $6,500 less to reach his deductible.

Contest Unfair Medical Bills

When Vivian Young’s husband had a colonoscopy, they were told by his doctor that it would be a free screening test under the Affordable Care Act. However, when the couple received an initial billing summary, the cost was $8,000 before insurance and their deductible kicked in. “Apparently he had polyps removed, which made the ‘screening test’ become a ‘diagnostic test,'” said Young, who is a senior content manager at Good Night’s Rest.

The couple thought the charge was unfair, so they decided to negotiate the medical bill. Young did research online before speaking with an insurance customer service representative. “I told her that according to the ACA, if a polyp is discovered and removed during a screening colonoscopy, it is considered part of the routine screening. Hence, no charge,” Young said.

Potential Savings: Thousands of Dollars

The insurance representative had no answers for Young and gave her another number to call to contest the charges. “I had to call repeatedly for over three weeks until the charges were removed,” she said.

However, Young’s husband was sent another bill with a $1,250 facility usage charge from the doctor’s office. “Apparently patients get charged for the privilege of stepping foot into their facility and using their equipment,” she said. So, more calls were made to get this charge removed. In the end, the couple paid $0 — proving that contesting unfair medical bills can pay off.

SYMPTOMS of MS

In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.

Over the course of the disease, some symptoms will come and go, while others may be more lasting.

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A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.

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"Stu's Views & MS News" / 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly

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